Dr Kev,

I agree, my daughter was caught in this because she was under 40 in the USA when screening was withdrawn. She was not at risk genetically as a great % of those who contracted BC are not according to what is ‘known’;  but she had a previous biopsy, this was not allowed as a consideration. Screening was refused by her insurance as was sonography. We paid, she was diagnosed with a phyloddes tumor and in the time it took to wrestle with the healthcare provider the tumour grew, so again  she was charged and then told that the surgeon who stated categorically he was in the network ended up being out of network . This caused her to have to file bankruptcy when her previous credit score her whole life had been impeccable.  Fortunately to date she has remained cancer free  after surgery but I can’t help but consider the toll this stress places on a compromised immune system and of the pain this thoughtless inhumane care caused.

I have another 2 friends who because of this prevailing thought of cancer under forty not being probable had their cancers ignored, one woman’s husband paid privately to have the lump excised and biopsied and was years later reimbursed whereas the other’s cancer progressed to stage 3 in the time from finding a lump to biopsy to jumping the legal hoops and red tape. I feel that all aspects of the social environment need to be considered and that all evidence needs consideration inclusive of that that shows limited evidence for widespread genetic abnormalities . I understand that incidence may be rare for under 40s and that routine screenings may be a waste of healthcare dollars but at the same time there needs to be recourse and education so doctors and woman can make confident evidence based choices about their own care.

I must admit I was chilled to the bone when I saw the comments about doing away with self exams as well as it is by this process that many of my contemporaries discovered the cancer in early stages and are alive today because of prompt effective intervention. I understand that a false positive is also distressing but surely nothing to compare with having to ‘put your affairs in order’

It would be illuminating to know the qualifications of those who are on these task forces, their COIs  and their legal responsibility for the decisions they make which will ultimately impact lives. It would be good if those neglected could communicate with them directly and also those who are freed from being labelled no responders which of course ultimately could impact their future care as well.

Best,

Amy

Hi Ben,